• The European Alliance for Newborn Screening in Spinal Muscular Atrophy calls upon the government of Europe to include a test for spinal muscular atrophy in national newborn screening programmes.
• Worldwide newborn screening projects and programmes for SMA clearly demonstrate that early detection and treatment of SMA prevents an early death or a life with a severe disability.
• As some European countries take the lead, the Alliance calls that by 2025, all children born in Europe are screened for SMA at birth and are able to access immediate treatment.

On Friday 26 March 2021 the Alliance officially launched the Whitepaper to the public with members from the SMA NBS Alliance, SMA Europe member organisations, policymakers, and other stakeholders.

The European Alliance for Newborn Screening in Spinal Muscular Atrophy (led by SMA Europe) demands that by no later than 2025, newborn screening programmes in all European countries include a test for spinal muscular atrophy for all newborn children.

After a delay in launching due to the COVID-19 pandemic, the Hospital Universitari i Politècnic La Fe de Valencia will launch a pilot neonatal screening program to detect spinal muscular atrophy (SMA) in all babies born in the Valencian Community, about 40,000 each year, both in public and private hospitals.

EURORDIS, Rare Diseases Europe, recently published the position paper Key Principles for Newborn Screening in January 2021. A multi-stakeholder EURORDIS Working Group on Newborn Screening developed the 11 Key Principles, establishing the scope of Newborn Screening, but also the steps that should be taken at the national and European level to make it a success.